Deyki's Make-A-Wish - 12/15 - Maybe not

[Corrine 1973]

Happy Birthday Nidra!!!!!

 

[Tnkrbelle565]

Happy Birthday Nidra!!!

Those kiddos are getting more gorgeous the more pics I see!!!


He is going to love Sci Fi! It's really fun in there and the food is good

Here are some pics from my last trip.

 

[Matt1026]

HAPPY BIRTHDAY NIDRA!!!!!!

 

[MomTo4+more]

Things change so very quickly around here! I have already changed my ADRs. Make-A-Wish got us lunch reservations at Cinderella's Royal Table for Monday, November 2. I cancelled our Sci-Fi ADR and scheduled the Crystal Palace for breakfast at 8:10 since we will have a 2:15 lunch at CRT. This gets us into the MK early and maximizes our day! I will schedule Sci-Fi for Tuesday.

I was very happy that I could get an early ADR at Crystal Palace even though I didn't call until 1:30 this afternoon!

So these are the plans for our very first day ever at Disney -

Start the morning with a wonderful view of Cinderella's Castle and Main Street without crowds of people. Get fun pictures with wonder and magic in their eyes.

Breakfast at Crystal Palace with our favorite bouncy friend.

Explore the Magic Kingdom.

Transform Chantae into Belle with the dress we found at the Disney Outlet - Thanks for the tip Corrinne!

Dine with the princesses at CRT. Watch Deyki turn bright red as he gets a kiss on the cheek from Cinderella.

More adventures exploring the Magic Kingdom.

Late dinner at GKTW.

A night of sweet dreams.


It sounds like a fantastic start to a wonderful week! It is just plain fun to see it all coming together!

 

[Matt1026]

Things change so very quickly around here! I have already changed my ADRs. Make-A-Wish got us lunch reservations at Cinderella's Royal Table for Monday, November 2. I cancelled our Sci-Fi ADR and scheduled the Crystal Palace for breakfast at 8:10 since we will have a 2:15 lunch at CRT. This gets us into the MK early and maximizes our day! I will schedule Sci-Fi for Tuesday.

I was very happy that I could get an early ADR at Crystal Palace even though I didn't call until 1:30 this afternoon!

So these are the plans for our very first day ever at Disney -

Start the morning with a wonderful view of Cinderella's Castle and Main Street without crowds of people. Get fun pictures with wonder and magic in their eyes.

Breakfast at Crystal Palace with our favorite bouncy friend.

Explore the Magic Kingdom.

Transform Chantae into Belle with the dress we found at the Disney Outlet - Thanks for the tip Corrinne!

Dine with the princesses at CRT. Watch Deyki turn bright red as he gets a kiss on the cheek from Cinderella.

More adventures exploring the Magic Kingdom.

Late dinner at GKTW.

A night of sweet dreams.


It sounds like a fantastic start to a wonderful week! It is just plain fun to see it all coming together!

OH This sounds like such a great adventure for you. We have very similar plans. It was so exciting to see your plans unfold because I kept thinking oh we are going to do that and yes me too!!! Congrats on getting everything planned. It has made me feel like a little girls too!!!!

 

[MomTo4+more]

Deyki is in extreme pain! We are heading to the ER in minutes when the sitter arrives for the other 3 kids. Please pray.

 

[maroo]

I am praying.......

 

[Tnkrbelle565]

praying

 

[Terry718]

Oh my gosh... you're in my prayers.

 

[Corrine 1973]

I am so sorry to hear about this.
Prayers and hugs for Deyki.

 

[Matt1026]

Please know that you are in our prayers!!!

 

[MomTo4+more]

We got home at 4AM - once again we have no answers. Last night was a pitiful waste of time and nothing but frustration.

As Deyki rolled back and forth on the ground last night moaning in tummy pain, I called the doctor. I had never seen him like that over abdominal pain before. I was concerned, but hoping there was something I could do at home and wait for his clinic appointment today. The doctor didn't like how he sounded and told me I really needed to bring him in because the Tylenol with Codeine wasn't even helping his pain. She suspected his gallbladder (as do I) and thought an ultrasound would be in order.

When we arrived he told the triage nurses he was in pain and they did a decent job getting him into a room within 15 minutes on a very busy night. Then we sat and sat and sat in a room without anyone checking Deyki. Then I saw who the attending doctor was for the evening. I knew it would not be a good evening.. This particular attending is the one doctor I don't like at this hospital. He has given inadequate care to Deyki before and sent us home on three occasions only to have him admitted later that same day - twice to the ICU! Last time he made us wait too long when Deyki was fading in and out of consciousness. That time I called his hematologist twice and she managed to get another hematologist down to the ER to direct Deyki's care. He ended up needing a spinal tap, emergency head CT, and was admitted with sepsis! I really lost hope of any help or answers when I saw he was running the show.

An hour and a half later, two brand new residents come into the room. When I say brand new, I mean they started their rotation in the ER in July. I know they have to start somewhere, but most of them are so much better at what they do several months from now. The residents felt his stomach and Deyki never woke up, so they decided the pain must be gone. They said they would consult with Mr. Attending . Three hours later I still have not had anymore contact with anyone! I went to the nursing station to ask what we were waiting for. They had just talked to Mr. Attending and had basically decided to do nothing but tell us to return to clinic today. They didn't do labs even though his hemeglobin had dropped a gram last week. No other labs that are standard with a sickle cell patient in this kind of pain. The attending never even eyeballed him or spoke to me!! The only thing done in hours in the ER was have 2 first year residents touch his belly. "He should have an ultrasound sometime in the near future because this could be his gallbladder," was the only discharge info I was given.

So today, I will take him to clinic with his doctor who cares and is excellent at what she does. I will look to her to find an answer for this pain. I will also talk to her about what she wants me to do when we need an ER and this particular attending is on. He is clearly unwilling to do anything for my son. he is bringing out the mother bear in me, and I am angry . I didn't fight him last night because I thought we could make it another 12 hours until Deyki sees his doctor. But what will we do next time?

Thanks for praying last night. Now if you would pray for answers and a simple solution. . .



ADR News -

I get home at 4am last night and my girls get up saying, "Mom, remember to make reservations for Sci-Fi in the morning!" Oh yeah, I think. That window of opportunity starts in an hour on-line. I decide I need sleep more than Sci-Fi and make up my mind to call when I wake up. I called around 9 and got the time we hoped for! Day two of our trip will be at DHS with a late lunch at Sci-Fi. We will have just had a long day at MK on day one, so I will take this day easier.

I am still in a sleep deprived daze and need to get everyone ready for the sickle cell clininc. I'll update when we know more!

 

[Tnkrbelle565]

We got home at 4AM - once again we have no answers. Last night was a pitiful waste of time and nothing but frustration.

As Deyki rolled back and forth on the ground last night moaning in tummy pain, I called the doctor. I had never seen him like that over abdominal pain before. I was concerned, but hoping there was something I could do at home and wait for his clinic appointment today. The doctor didn't like how he sounded and told me I really needed to bring him in because the Tylenol with Codeine wasn't even helping his pain. She suspected his gallbladder (as do I) and thought an ultrasound would be in order.

When we arrived he told the triage nurses he was in pain and they did a decent job getting him into a room within 15 minutes on a very busy night. Then we sat and sat and sat in a room without anyone checking Deyki. Then I saw who the attending doctor was for the evening. I knew it would not be a good evening.. This particular attending is the one doctor I don't like at this hospital. He has given inadequate care to Deyki before and sent us home on three occasions only to have him admitted later that same day - twice to the ICU! Last time he made us wait too long when Deyki was fading in and out of consciousness. That time I called his hematologist twice and she managed to get another hematologist down to the ER to direct Deyki's care. He ended up needing a spinal tap, emergency head CT, and was admitted with sepsis! I really lost hope of any help or answers when I saw he was running the show.

An hour and a half later, two brand new residents come into the room. When I say brand new, I mean they started their rotation in the ER in July. I know they have to start somewhere, but most of them are so much better at what they do several months from now. The residents felt his stomach and Deyki never woke up, so they decided the pain must be gone. They said they would consult with Mr. Attending . Three hours later I still have not had anymore contact with anyone! I went to the nursing station to ask what we were waiting for. They had just talked to Mr. Attending and had basically decided to do nothing but tell us to return to clinic today. They didn't do labs even though his hemeglobin had dropped a gram last week. No other labs that are standard with a sickle cell patient in this kind of pain. The attending never even eyeballed him or spoke to me!! The only thing done in hours in the ER was have 2 first year residents touch his belly. "He should have an ultrasound sometime in the near future because this could be his gallbladder," was the only discharge info I was given.

So today, I will take him to clinic with his doctor who cares and is excellent at what she does. I will look to her to find an answer for this pain. I will also talk to her about what she wants me to do when we need an ER and this particular attending is on. He is clearly unwilling to do anything for my son. he is bringing out the mother bear in me, and I am angry . I didn't fight him last night because I thought we could make it another 12 hours until Deyki sees his doctor. But what will we do next time?

Thanks for praying last night. Now if you would pray for answers and a simple solution. . .



ADR News -

I get home at 4am last night and my girls get up saying, "Mom, remember to make reservations for Sci-Fi in the morning!" Oh yeah, I think. That window of opportunity starts in an hour on-line. I decide I need sleep more than Sci-Fi and make up my mind to call when I wake up. I called around 9 and got the time we hoped for! Day two of our trip will be at DHS with a late lunch at Sci-Fi. We will have just had a long day at MK on day one, so I will take this day easier.

I am still in a sleep deprived daze and need to get everyone ready for the sickle cell clininc. I'll update when we know more!

Oh how awful! I'm so so sorry that you had to go through this last night. Do you have a Children's Hospital near you with an ER that you could go to instead???

 

[Sandy321]

and prayers for you and Deyki!!

I know you are in this area - what ER are you going to? I have a pediatrician in the practice that I feel the same way - I took my son in - and when I realized it was him or no one (it was a Saturday walk - in appt!) I wanted to cry - he dismissed my son with a "virus" but I went out in the hall - and saw our regular pediatrician - THANK GOD!! My son had walking pnemonia!! (our doctor just asked if he could "consult" as it was his patient - he was so diplomatic!)

Glad you are going to ask how to get around that freak of a Doctor!

On your ADR Success!!

 

[MomTo4+more]

Oh how awful! I'm so so sorry that you had to go through this last night. Do you have a Children's Hospital near you with an ER that you could go to instead???

There are lots of children's hospitals near me. This is actually the Children's hospital where all Deyki's specialists are. they are usually excellent with him. It's just the one attending who I have issues with.

and prayers for you and Deyki!!

I know you are in this area - what ER are you going to? I have a pediatrician in the practice that I feel the same way - I took my son in - and when I realized it was him or no one (it was a Saturday walk - in appt!) I wanted to cry - he dismissed my son with a "virus" but I went out in the hall - and saw our regular pediatrician - THANK GOD!! My son had walking pnemonia!! (our doctor just asked if he could "consult" as it was his patient - he was so diplomatic!)

Glad you are going to ask how to get around that freak of a Doctor!

On your ADR Success!!

We go to University of Chicago Comer Children's Hospital. It is usually a very good place to be. I am hoping that Deyki's doctor can help me get perspective on this particular doctor. There has to be an answer other than going to a different hospital whenever he is in charge.

I'm glad you met up with your doctor in the hallway and your son got the care he needed!

 

[Corrine 1973]

I am so sorry you and Deyki had to go through all of this. Hopefully you get some answers with the Clinic today.

I can't believe that doctor. I had a similar experiance with my son's original Pediatrician. He refused to believe my son had CF and treated me like I want to have a sick child. Some people should not be doctors, or at least not deal with people.

 

[Sandy321]

There are lots of children's hospitals near me. This is actually the Children's hospital where all Deyki's specialists are. they are usually excellent with him. It's just the one attending who I have issues with.



We go to University of Chicago Comer Children's Hospital. It is usually a very good place to be. I am hoping that Deyki's doctor can help me get perspective on this particular doctor. There has to be an answer other than going to a different hospital whenever he is in charge.

I'm glad you met up with your doctor in the hallway and your son got the care he needed!

UofC does have a great reputation - hope and pray you find "a door" to get around that one attending!!

Prayers are a powerful thing I have discovered!!

 

[Matt1026]

I really hate that you had to go through that. We have the similar thing happen to us. I hope you will be able to find something out when you go to your doc.

Just wanted to you know we are still praying.

 

[MomTo4+more]

We are getting closer to answers. At least we have some very solid theories and a plan to test them out. I am very tired from the past two days, so I will just state what we have learned. Don't count on any decent writing skills for this update - I am just too tired!

Deyki's appointment to day was excellent. I shared my frustrations about last night with his doctor and felt listened to. She is going to give some thought to a solution. We have what could be a big clue to the puzzle - Deyki tested positive for salmonella when he was in the hospital in May. The positive test results came back after he was discharged and no one called me to let me know. Now we at least know what caused that very high lingering fever and sepsis. Deyki was so very sick in May. Fast forward to the present - salmonella can gather and grow in the gallbladder. It could well be the reason for Deyki's pain. He could also have gallstones related to sickle cell. If either one of these theories proves to be the answer, Deyki will need surgery to remove his gallbladder soon. They are scheduling an ultrasound and an appointment with the surgeon.

His doctor also wants to have a brain MRI/MRA in September to monitor Deyki's moyamoya and Chiari. He will need to be admitted for a blood transfusion a couple days before the MRI.

I am not too stressed about anything I heard today because I am too sleepy and operating on auto-pilot. After some sleep I think the reality of the threat of a nother surgery and all we need to follow-up on will hit me. For now I just wanted to update all of you who are so kind to check in on Deyki before I head upstairrs and get some much needed sleep. Thanks for your support and prayers!

 

[Matt1026]

We are getting closer to answers. At least we have some very solid theories and a plan to test them out. I am very tired from the past two days, so I will just state what we have learned. Don't count on any decent writing skills for this update - I am just too tired!

Deyki's appointment to day was excellent. I shared my frustrations about last night with his doctor and felt listened to. She is going to give some thought to a solution. We have what could be a big clue to the puzzle - Deyki tested positive for salmonella when he was in the hospital in May. The positive test results came back after he was discharged and no one called me to let me know. Now we at least know what caused that very high lingering fever and sepsis. Deyki was so very sick in May. Fast forward to the present - salmonella can gather and grow in the gallbladder. It could well be the reason for Deyki's pain. He could also have gallstones related to sickle cell. If either one of these theories proves to be the answer, Deyki will need surgery to remove his gallbladder soon. They are scheduling an ultrasound and an appointment with the surgeon.

His doctor also wants to have a brain MRI/MRA in September to monitor Deyki's moyamoya and Chiari. He will need to be admitted for a blood transfusion a couple days before the MRI.

I am not too stressed about anything I heard today because I am too sleepy and operating on auto-pilot. After some sleep I think the reality of the threat of a nother surgery and all we need to follow-up on will hit me. For now I just wanted to update all of you who are so kind to check in on Deyki before I head upstairrs and get some much needed sleep. Thanks for your support and prayers!

I am glad you are finding out what is going on. Hopefully your doc can help you get the ER problem taken care of. I know we have ran into the same problem. We are praying for you and your family. I hope you have had a good nights rest!!!